Not Everything Translates

Category: Okategoriserade

  • A state of chronic crisis

    Of all the people diagnosed with cancer each year, neuroendocrine tumors (NETs) account for approximately 0.7%. Of those, 30–35% have small intestinal NETs. More than half of them develop carcinoid syndrome, and according to the figures I have come across, only around 10% of patients with small intestinal NETs have inoperable disease.

    I belong to every single one of these groups. I have around 40, pretty large metastases throughout my body, an inoperable primary tumor, and an incurable cancer that has already changed my life beyond recognition. Statistically, I am a minority within a minority within a minority, and even among people with the same diagnosis, I struggle to recognize my own reality in their experiences. Some undergo surgery, others receive treatments that significantly reduce their tumor burden, and many live relatively normal lives with a slow-growing disease. My own situation is one of extensive metastatic cancer, limited treatment options, and a body that is already severely compromised.

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  • Life has not yet fallen silent

    I live in a body that constantly demands my attention.

    It is remarkable how little we think about our bodies when they work. They are simply there, as unquestioned as air or gravity. We do not live in them. We live through them.

    Then one day, the body no longer wants to be a window to the world. It becomes the world itself.

    Every decision passes through it.

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  • Black matter

    I live in a body that is sick in several ways at the same time. Cancer is part of it, but it is not the whole story. There is also the exhaustion, the constant nervous system activation, the racing heart, the breathing that never quite feels effortless, and a body that constantly demands my attention.

    The hardest part is not that I will die one day. I have, I think, in all ways possible for a loving human being, accepted that. The hardest part is living in this in-between place.

    I am not well enough to live freely. I am not sick enough for everything to stop. I exist in a limbo that could last a very long time.

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  • Death as a friend

    I’ve been thinking lately, that there is a taboo around death. Or probably many. But one I keep coming back to: that we are supposed to want to live, no matter how we are actually doing. Especially those of us who are chronically ill.

    I feel like there is this idea that when death is breathing down your neck, you reach some special kind of gratitude for life. Almost something romanticized. As if we walk around with a hidden insight, a quiet wisdom about what life really is.

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  • Barakah! Barakah!

    I had a dream some time ago.

    In the dream I met a medium who seemed very eager to speak with me. She asked me to lie down and close my eyes. I was told I would see my life in symbols.

    What I saw were square pieces of fabric. Solid colors. Black. White. Midnight blue. They were placed on top of each other, neatly stacked. And beneath them all, a paper doily. The kind you put under a cake. And it had blood stains on it.

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  • packing up

    My journey is beginning to come to an end,
    and I feel done.
    Done and at peace.

    On Friday, I will check out of the hotel
    and spend my last days in Prague together with my daughter, Alma.

    I am so glad I chose to do this, just for me.
    I know it has been quite hard for those at home, especially for Alma.
    But I think there may be something valuable in that too.

    It may sound brutal, but to try, just a little,
    what it is like to be apart.
    To not have to hold on to each other in a tight grip,
    out of fear that one day we will no longer be together.

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  • a quiet battle ground blues

    I used to think that the hardest part of illness would be the pain, or the fatigue, or the word cancer itself. But what hurts the most is something else. Uncertainty. I have never been particularly good at it. I want to understand, to be able to orient myself, to know roughly where I am. When the body is no longer reliable, that becomes harder. When the future can no longer be calculated, it becomes even harder.

    There is a kind of irony in the fact that I have ended up with a disease that does not fit neatly into any category. It is cancer, but not in the way the word is usually meant. It is chronic, but not stable. It is slow, but constantly present. It can be treated, but not cured. It can be lived with, but never ignored.

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  • Quantity or Quality of life

    My quarterly scan is coming up, and with it comes stress and anxiety about the results. I think it will be fine. But how could I possibly know.

    I have a hormone-producing neuroendocrine cancer that cannot be cured, but can be treated. Right now my treatment has two parts. One is about slowing tumor growth, in other words making an already slow development even slower. The other is about reducing the production of serotonin, which causes major problems with my digestive system, flushing, and heart palpitations. My treatment means injections every other week and daily pills.

    On the surface of tumor cells there are small receivers called receptors. You can think of them as locks. The treatment works by using a key that fits into those locks.

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  • Coming Home

    I have been thinking a lot about what happens when I come home.

    The last time I went to rehabilitation, I rebuilt my body. Two weeks of steady training. I felt strong, almost high on the fact that my body could handle so much more than I had believed. When I came home, everything collapsed. Not because my body stopped working, but because everyday life returned in full force. So many decisions I had not had to think about inside the safe structure of the rehab center. So much noise. Relationships. Impressions. Everything at once.

    I could not cope, and I concluded that I was the one who failed. It became a kind of personal defeat.

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  • Good stuff

    Sometimes you should give up. And sometimes you should endure.
    I am glad I endured.

    I believe cultural clashes mostly happen inside us, even though it is much easier to focus on what we think is colliding with us from the outside. What I really clashed with was my own vulnerability and my fear of feeling alone.

    At home, I do not feel that way. There is so much love there. So many people who show me every day that I matter.
    Here, I had to face that inner collision and slowly realize that I am the one who chooses how I feel in a new context.

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